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January 10, 2019

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CGS in the News
News

CGS-organized workshop in Geneva on human germline modification


In January, CGS and Roberto Andorno of the University of Zurich are co-organizing a 3-day workshop, Engineering Future Generations? The New Debate about Societal Governance, Public Engagement, and Human Gene Editing for Reproduction. Supported by and held at the Brocher Foundation in Geneva, Switzerland, the workshop will bring together an invited group of researchers and advocates from Europe, North America, and New Zealand to discuss models for public engagement on the issue of human germline editing. Marcy Darnovsky, Katie Hasson, and former CGS Program Manager Leah Lowthorp will all be participating.

Thank you!


Your generosity made our end-of-the-year fundraising effort a success! After a year of shocking developments, 2019 will be a time for bold action. Our fight against eugenic policies and technologies depends on your support. You can give to support our work here: Donate to CGS.


Biopolitical News of 2018

By Pete Shanks, Biopolitical Times | 01.06.2019
The biggest biopolitical news of the year was also the most significant: the claim that gene-edited twin girls were born in China. Read on for an overview of the year’s biggest developments on a range of human biotechnologies, including race and eugenics, assisted reproduction, genetic testing and forensics, stem cells, and more.


A Dozen Notable 2018 Blog Posts

By Pete Shanks, Biopolitical Times | 01.06.2019
Following a longstanding Biopolitical Times tradition, we present some of our favorite commentaries of the past year by CGS staff and guest contributors.


- TOP -

Editorial: California Shouldn’t Keep DNA from Hundreds of Thousands of Innocent People
[cites CGS' Marcy Darnovsky]

by Editorial Board, San Francisco Chronicle | 12.14.2018
California is being sued over its forensic DNA practices, and the only thing that’s surprising is how long it took. The lawsuit, filed by the Center for Genetics and Society, the Equal Justice Society, and the Electronic Frontier Foundation, challenges the state’s practice of retaining DNA from legally innocent people. There is no legitimate reason for the state to collect and store the DNA profiles of people whose only infraction was being arrested and booked into jail.


Watchdogs Sue California over Keeping DNA from Arrests with No Conviction
[cites CGS' Marcy Darnovsky]

by Robert Salonga, The Mercury News | 12.10.2018
“One-third of people arrested for felonies in California are never convicted. The government has no legitimate interest in retaining DNA samples and profiles from people who have no felony convictions, and it’s unconstitutional for the state to hold on to such sensitive material without any finding of guilt,” said Darnovsky.


WHO to Create Global Advisory Panel on Human Gene Editing
[cites CGS' Katie Hasson]

by Marcia Frellick, Medscape | 12.18.2018
The World Health Organization is forming a panel to research human gene editing and the scientific, legal, social, and ethical challenges that come with it. "You need people who are experts in the social dynamics and the historical examples of how technologies have been used. You need people who are already engaged in work around the kinds of inequalities and oppressions that are likely to intersect with the technology,” says Katie Hasson.


Scientists Say Gene-Edited Babies Claim Is 'Wake-Up Call' For World
[cites CGS' Marcy Darnovsky]

by Rob Stein, NPR | 12.13.2018
As the National Academies call for “global standards” for human gene-editing to proceed “safely and ethically,” experts are concerned: “This is a breathtakingly shameless effort to turn He Jiankui's reckless experiment into a green light for forging ahead with human germline modification," said Darnovsky.


Human Genome Editing
Assisted Reproduction
Eugenics
Various

HUMAN GENOME EDITING

Human Genome Editing: Ask Whether, Not How

by J. Benjamin Hurlbut, Nature | 01.02.2019
In calling for standards for producing “CRISPR-edited” babies, scientific leaders have shunted aside a crucial and as-yet-unanswered question: whether it is (or can ever be) acceptable to genetically engineer children. That question belongs not to science, but to all of humanity.

The Right to Design Babies? Human Rights and Bioethics

by Roberto Andorno and Alicia Ely Yamin, Open Global Rights | 01.08.2019
Even with the best intentions, humanity doesn't have the right to use technologies to design our descendants according to our preferences.

Jiankui He: A Sorry Tale of High-Stakes Science

by Landon J. Getz, Graham Dellaire & Françoise Baylis,
Hastings Bioethics Forum | 12.10.2018
In the interest of garnering fame and fortune, He Jiankui failed to be transparent and act ethically. One moral of this story is that fast-paced, highly competitive science is fraught with danger. This provides good reason to change the way we collectively conduct science, to reward transparent, collaborative and open inquiry.

News of the First Gene-Edited Babies Shows That Science Can't Police Itself

by Michael Hiltzik, Los Angeles Times | 12.07.2018
News of the first gene-edited babies stunned the scientific community worldwide. As He Jiankui’s unethical actions demonstrate, science has no real way of enforcing a consensus that something should not be done.

We Have Ways to Stop Rogue Scientists. They Don’t Always Work

by Maggie Koerth-Baker, FiveThirtyEight | 12.10.2018
The mad scientist will never go away. Should scientists with radical ideas be allowed to self-regulate their work or should they answer to the public?

Years Before CRISPR Babies, This Man Was the First to Edit Human Embryos

by Antonio Regalado, MIT Technology Review | 12.11.2015
In 2015, an unknown Chinese scientist edited the DNA of human embryos. The reaction to his work was instant, visceral, and global. In November 2018, the announcement that gene-edited babies had been born inspired a sense of déjà vu. Once again, an ambitious Chinese scientist had crossed into unknown territory to score a controversial first – and had his work rejected and attacked by furious Western scientists.

A Genetically Augmented Future

by Ellen Wright Clayton, Nature | 12.12.2018
Concerns about equity should lead society to develop guidelines for gene therapy. A more likely and unsettling scenario is that physicians will be left to rely on their own ethical commitments to decide when to use it.

Baby Gene Edits Could Affect a Range of Traits

by David Cyranoski, Scientific American | 12.12.2018
He Jiankui targeted the CCR5 gene because it is well studied, and because its mutation offers protection against HIV infection. But the potential consequences of lacking a working CCR5 gene are probably greater than we have established so far. What we know may be the tip of the iceberg.

He Jiankui’s Genetic Misadventure, Part 2: How Different Are Chinese and Western Bioethics?

by Jing-Bao Nie & Neil Pickering, Hastings Bioethics Forum | 12.13.2018
He Jiankui’s announcement on gene-edited babies appears to provide more compelling evidence that China is the “radical other” of the West, a wild land where bioethics matters little. But are Jiankui’s actions universally welcomed in China? Or do Chinese and Western scientist share fundamental ethical principles?

ASSISTED REPRODUTION
- News TOP -

From Sex Selection to Surrogates, American IVF Clinics Provide Services Outlawed Elsewhere

by Ariana Eunjung Cha, The Washington Post | 12.31.2018
In recent years, many countries have moved to impose boundaries on assisted reproduction technologies and services. However, the U.S. fertility industry remains largely unregulated and routinely offers services outlawed elsewhere.

Are Fertility Drugs Safe? The Industry Says Yes; Critics Worry They’re Overprescribed

by Ariana Eunjung Cha, The Washington Post | 12.27.2018
Formerly known as “wonder drugs,” fertility hormones are now being linked to Ovarian Hyperstimulation Syndrome and other negative health effects in women.

Surrogacy Should Be Regulated, but the New Bill Falls Short

by Deepa V., Sarojini Nadimpally & Oshin Siao Bhatt, The Wire | 12.20.2018
Although regulation of surrogacy is valid, urgent and necessary, the bill recently passed by the Indian government falls short on several counts. It limits the consumers of commercial surrogacy to married, heterosexual couples and dictates that only married women, with the consent of their husbands, can act as surrogates.

EUGENICS
- News TOP -

UCL Launches Inquiry into Historical Links with Eugenics

by Anna Fazackerley, The Guardian | 12.06.2018
Students and staff are pressuring University College London to launch an inquiry into secret eugenics conferences, with white supremacist guest speakers, held at the school.

Academic Society to Retract Push for Eugenic Protection Law 66 Yrs After its Proposal

by Norikazu Chiba, The Mainichi | 12.19.2018
In 1952, the Japanese Society for Hygiene submitted a proposal to the government asking for the promotion of forced sterilization operations as a means of population control. The Society has recently decided to retract its proposal.

VARIOUS
- News TOP -

Just Thinking You Have Poor Endurance Genes Changes Your Body

by Jocelyn Kaiser, Science | 12.10.2018 Stanford researchers deceived participants into thinking they had genetic traits that positively or negatively affected their endurance. They found that telling participants they had “good” or “bad” genes actually changed their physiology.

California Setting Stage for Crackdown on Dubious Stem Cell Clinics

by David Jensen, California Stem Cell Report | 12.09.2018
The state of California is aiming to curb around 100 unregulated clinics that offer high-cost stem cell treatments that have not been tested or scientifically validated.